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Thank you! Your rant has made my morning. This in particular:

No Increase Pacing (NIP) is our type of pacing. The problem is always when the psycho-social folk start to push for increase. That word itself is where their "Pacing" ceases to be Pacing as patients talk about it.

Well done IiME and Kathleen McCall. Calling a spade a spade!

Excellent news. :)

This is what I wrote: "I am sure you are aware of this debate coming up in Westminster on 20th February. I hope you will consider attending on behalf of local ME patients. If a time could be arranged prior to this date, I would be grateful for the opportunity to talk with you again about ME...

I have written to MP this morning and offered to meet him in advance of this debate. I think it is likely he will attend, as he has been supportive in the past.

My own personal feeling is that I would avoid the 2 day CPET. 6 mins maximal exertion would floor me, and repeated the next day would I fear permanently lower my abilities. It is a problem when the very act of measuring something might ensure that the score obtained is already obsolete...

Mitochondria are apparently now part of the psychosomatic construct! https://journals.lww.com/psychosomaticmedicine/fulltext/2018/02000/Psychological_Stress_and_Mitochondria___A.3.aspx Thanks to Amanda on Facebook for finding this.

Yes to this.

It is so difficult with all this NICE stuff. I was so pleased with the mood of the meeting in January, where I felt patients were definitely being reassured about the handling of the new guideline. Then I see a reply like that recent one, and I think that NICE are not giving us a...

Thank you for sharing this. Not an easy task to define PEM. Would you ever consider the "PE Deterioration" label instead of "malaise" which tends to remind me of swooning Victorian ladies. :P

I haven't read this whole thread yet (I probably should) but this is the comment I added to the questionnaire: Jane Colby suggests "Post Exertional Deterioration" instead of "malaise". I like this idea, as "malaise" is a word that suggests something fairly minor. "Deterioration" on the...

Another thought. If an existing service is abandoned - it no longer exists. (Stay with me.) Perhaps he is worried if he removes the CBT/GET clinics, then the funding for those clinics will disappear and it will be more difficult to re-instate the funding for a new ME service in 2020?

Absolutely. :)

YES! "Managing Expectations" ... such a valid point.

Very good rant Trish, but why wait til "after diagnosis" to give the advice? Sure, it may be unwise to diagnose a patient with ME when they are only in the first few weeks of experiencing problems, BUT early advice such as you list could be excellent as a precautionary measure - until such...

Yellow card: https://yellowcard.mhra.gov.uk/the-yellow-card-scheme/ I "think" this implies that therapies are not part of the yellow card scheme. @Barry (Does this maybe need a new thread?)

Agree @Barry Also I think it is a concern that there is a yellow card system for pharmaceuticals, but not for psychological/psychiatric therapies. So how can GPs and patients officially report problems with GET/CBT?

I've put both a report of my impressions of the meeting, and my list of points to raise, into this blog post. http://sallyjustme.blogspot.co.uk/2018/01/nice-stakeholder-meeting-for-cg53.html Both items also exist as "Notes" on my Facebook wall..... And now I need to sleep... xx

I've put both a report of my impressions of the meeting, and my list of points to raise, into this blog post. http://sallyjustme.blogspot.co.uk/2018/01/nice-stakeholder-meeting-for-cg53.html Both items also exist as "Notes" on my Facebook wall..... And now I need to sleep... xx